Adam's disease has, as expected, progressed. There are no new areas of disease, but increased intensity in skeletal uptake is seen on the PET scan. Bone marrow biopsies also confirm extensive progression, neuroblastoma now invades almost all of the bone marrow space. This coming week we are due to start a different combination therapy based upon Adam's genomic profiling. Tomorrow (Monday) he is due to have a new portacath surgically inserted.
His temperatures have been higher than they were last week, but not to the extent that he has spiked an actual fever. His leg is still giving him a lot of problems and he is mostly immobile.
Thank you for Adam's birthday wishes. He enjoyed the day (Friday) as much as was possible, and he had some nice presents. The morning was spent in clinic discussing scan/test results, but living a life that is impossible to explain to anybody who hasn't been through something like this, we got on with his birthday regardless. His leg was much improved from the day before, and I probably encouraged him to do too much. We went out during the afternoon, and stayed out for some food; when we returned he was in a lot of pain and discomfort. Not a good end to the day, so unfair on him, and nothing we could do to help. At one point, when no amount of shuffling would help, and no change of position brought any relief, he resorted to simply thumping his "Stupid, stupid leg".